- Hi there - thanks in advance for taking the time to read my plight and apologies for the mammoth post, I am desperate and hopeful that someone here might be able to help.
We have 4 children aged 16, 14 and 8yr old twins one of whom is severely autistic. He is non verbal, and cannot read or write (and probably never will). He is currently home schooled and up until recently that has worked well for us and I’ve generally loved being able to have him at home with me. He has always been challenging at times with occasional spells of behavioural problems but nothing we couldn’t manage between us.
We get no help at all from our local authority because they argue that home Ed children aren’t entitled to the ‘pot of money’ allocated to children with an EHCP. We have never pushed the point probably because we’ve never really needed to, until now.
When Noah turned 7 his behaviour significantly changed. He began to have impulsive outbursts daily which meant he couldn’t focus or learn and made it impossible to take him anywhere. He would run away in shops, go up to people and shout at them, and generally cause mayhem. He is tall and strong and it became almost impossible for me to hold him. He has no road sense whatsoever so this was dangerous and scary. We fixed this by getting him a disabled buggy and strapping him in just so that I could do a weekly food shop etc.
Night times also became difficult because he would run around shouting, jumping on his siblings and attacking us in bed sometimes until the early hours. We managed that in the end by applying for a special needs bed that kept him safe and secure through the night - worked brilliantly and he was sleeping better for it.
fast forward a year and our lives have taken another turn for the terrible and I really don’t know what to do. I managed to toilet train Noah aged 6. It took months of painstaking slog and patience but in the end I managed to get him out of pull ups (in the daytime at least), and using a loo. For 3yrs he has happily taken himself off to the toilet as and when he needs to go with no problem at all! He would hold his wee for hours if we were out and always wait to go. This last month that as all changed.
A few weeks ago I left him with him with grandparents for an hour whilst I went to his brothers parents evening. When I returned my mum reported that he had taken down his trousers and urinated on the carpet (possibly because he was unsure about going to the loo in that moment). My husband took him straight to the toilet and cleaned up. Since that one time he has made it his mission to wee anywhere and everywhere. We have tried not to react, remain calm and simply redirect him but it has failed. I bought a onesie that he couldn’t get access to which initially did the trick but after a week he decided to wee in the onesie and since then it’s been horrendous. He simply wets himself whenever he chooses and makes no attempt to use the loo. He now laughs maniacally as he does it and looks for us to react. He has even taken to stripping off and squeezing out a few drops just to get us to respond which we of course try not to do but very difficult not to a try least show some irritation when he has urinated for he umpteenth time on the floor!
i have tried sweets, raising my voice, time out (which I don’t think he understands) and doing absolutely nothing, but none of it works and I am in despair! This weekend his behaviour has escalated further and when he doesn’t get a response to the weeing he starts to throw ornaments/toys/gadgets around the room, puts things into his mouth to the point of vomiting and generally run us ragged and the point of breakdown. Today has been so bad he has been continuously manic and completely out of control - I even contemplated taking him to casualty today so desperate were we. We are actually worried he will harm himself or his siblings if he continues with this behaviour.
He has had periods of difficult behaviour in the past but at least interspersed with moments of calm, not any more........:-( In the end today we strapped him into his pushchair just so we could prepare dinner.....even then he stripped off all his clothes and continuously forced out wee whilst laughing and looking to us to react. Just awful. I have lost count of how many times I’ve taken myself off to another room just to cry. I feel as though he is possessed. There is no rest or relaxing or end in sight.
i am aware that any reaction we give is potentially reinforcing because of the autism so we aren’t really sure how we’re supposed to deal with this. We have avoided medication for nearly 9yrs but we fear that it may be the only option - we do after all Have our other children to think about.
if anyone has any insights we would be so grateful. Is this kind of behaviour normal in severe autism? Do they just randomly go back to intentionally wetting after years of being dry? Why the sudden need to trash the house continuously when he’s never done anything like it before. Do we have any options other than meds or full time schooling?
I have wondered if it’s partly boredom but since Christmas I have been taking Noah to lots of outside activities such as soft play, swimming, group activities etc - he loves those and rarely misbehaves if he’s doing something he likes but obviously time and money Means he can’t be constantly occupied away from the home.
Anyway thanks for reading, We really are desperate for some solutions and are open to any suggestions/experience. Apart from a speech therapist we don’t get any other help or intervention with Noah btw xx
